So if I or my doctor was only just starting to think about post polio what would I need to know?

POLIOMYELITIS

- an entero- virus (ie tummy wog) of the picornavirus family.  There are 3 strains of polio Types 1, 2 & 3 - & having polio does not protect us from the other 2 strains.  NB polio can be caught from the nappy of a child who has been vaccinated with Sabin (a live weakened virus) for up to 4 months later - if you are not vaccinated.  Salk (injection) wears off over time.  It is advisable to now have Sabin (oral) booster.  NB Australia is to soon change to 2 initial Salk followed by 2 Sabin for babies, to lessen risk of vaccine-caused polio.

CATEGORIES of POLIO

  1.  Paralytic - spinal &/or bulbar (eg iron lung)
  2.  Paralytic - slight paralysis or weakness only
  3.  Non-paralytic - 'flu-like with muscle irritability
  4.  Abortive  - 'flu like symptoms only
  5.  Sub-Clinical - no symptoms

Prior to vaccination most people caught polio with no ill effects ie 95% fit category 5.  Only 5% had a recognisable dose of polio ie 1- 4 and only 2.5% were left with any residual weakness or paralysis.

Anyone from categories 1- 4 may now be experiencing further physical deterioration.  These people would have had some nerve and muscle damage due to polio even if it is not apparent to us.  It may be picked up by a neurologist with EMG testing.  In fact those walking around, with a busy life, are more likely to have problems than those sitting in wheelchairs.  They are still using more muscles, probably at a faster rate because there are less left.  Weakness is only apparent when nerve and muscle capacity is less than 40-50% of original total.  However we all lose a small percentage annually as we age so with polio we can reach 40% earlier than others.

Polio people walk a tightrope whereas non-polios are on the footpath. We have no reserves to fall back on.  They were lost to polio.

Polio people avoid doctors and hospitals.  They had enough of them when they had polio.  We need to be pretty desperate to front up to a doctor.  We are likely to trivialise symptoms.  We often live with constant pain and fatigue anyway.  We accept these as "normal".  Our whole life since polio has been an attempt to fit back into the community - to just be NORMAL" !!

Polio people often don't see themselves as disabled.

MOST COMMON SYMPTOMS
    Undue fatigue
    New muscle weakness
    Pain - muscular and/or joint
    Lack of endurability
    Breathing difficulties
    Sleeping problems - apnoea & disturbed sleep
    Swallowing difficulties
    Reduced ability in daily activities
 
USEFUL TREATMENTS
  1.  Slow down - don't exhaust
  2.  Exercise cautiously within capacity
  3.  Support nerves & muscles with supplements where indicated eg carnitine, magnesium, B6
  4.  Use aids & equipment where appropriate sooner rather than later.  eg caliper, wheelchair
  5.  Eat to help body not hinder eg red meat for carnitine, lose weight, blood group foods
  6.  Avoid medications that worsen polio eg beta blockers, cholesterol drugs, muscle relaxants
  7.  Explore alternative options - eg massage, Feldenkrais, Bowen, magnets, chiropractors, yoga
 
 USEFUL RESOURCES
  1.  Work in partnership with your GP
  2.  Get advice from your Polio Network
  3.  Use experienced Specialists
      Orthotic Dept - RPH - SPC for calipers, splinting,  corsets & braces, special shoes
       Late Effects Clinic - RPH - SPC for exercise
       Sleep Disorder Clinic - SCGH for apnea
       Pulmonary Physiology - SCGH for breathing
       Neurologist - Dr R Goodheart - (polio trained)
       CAEP for aids at your local hospital OT Dept or
             Rehab Engineering & Pressure Clinic at RPH - SPC for wheelchairs & cushions
       Silver Chain for home help, showering etc
       Half price Wheelchair Taxis -Transport Dept
       Disabled Parking - apply ACROD

MEDICAL ALERT
Polio symptoms may be worsened by the following. They should be avoided or used with caution.
  Beta-blockers - eg betaloc, inderal, tenormin
  Benzodiazapines - eg valium, serapax, ativan
  CNS depressants - eg mogadon, normison
  Muscle relaxants -  scoline, atropine, buscopan
  Cholesterol reducing drugs - pravachol, zocor
  Local Anaesthetics - eg lignocaine, xylocaine  includes eye drops & dental work caution
  General Anaesthetics - all types - monitor dose carefully. No need for premed or muscle relaxants

 NB  Polios may take twice as long to recover from surgery, accidents, anaesthetics, fractures, trauma